Saturday, 14 September 2013

Thrills and screams

It’s Saturday morning and
I’m sitting on a coach travelling down the M1 in Derbyshire, just passing
Bolsover Castle. The red digital clock above the driver’s head has just clicked
over to 8.58am – and whilst I know this to be true – my eyes are clearly having
a little difficulty catching up with the morning.

The scene out of the
window does nothing to stimulate my eyes – heavy cloud providing a thick grey
canopy above the murky, damp landscape. September has forgotten her smile this
morning.

The coach is not quite
full and everyone has settled down from the initial excited chatter to a calm,
quiet conversation. Another hour or so to go – destination Alton Towers. It’s
our local Down’s syndrome support group’s main trip of the year. It might be
calm at the moment but I guarantee it won’t be like this by lunchtime!

I move to an empty seat in
an effort to find some cool air – clearly our reliable and steady driver thinks
that people with disabilities can’t cope with mid-September dank Derbyshire
temperatures so has cranked up the heat to just above the “Tropic of Capricorn”
setting on his climate control panel! Outside it looks more like Reykjavik than
the tropics so I sit back thankful that at least for this part of the day I’m
warm and I’m dry. It won’t be like that by lunchtime either!

Across the aisle Emily is
sat with Lily. They’re both 21, both students at college and both have Down’s
syndrome. They’re clearly enjoying each other’s company, excited for the day
and doing lots of (probably inappropriate) chat and girly giggling. Emily had
wanted to sit next to her friend Yas (who also has Down’s syndrome), but she came
home from college yesterday saying Yas wasn’t coming. This is not uncommon. Yas
says this every time. But she always comes. But today is different she arrived
to drop her mum off and went home with her dad! She’s a sad loss to our day as
she is full of fun and a vest for life so often missing from her generation (and she's also full of some very inappropriate language which keeps us entertained no end) but I’m glad that she’s
been empowered to make an adult decision that’s respected as the final word.

So who is here? Well quite
a number of families actually, it’s a trip to benefit mums, dads, brothers and
sisters, not just the person with Down’s syndrome. Having someone with a
disability in your family affects the whole family so we feel it’s right to
provide something to benefit the whole family.

There are quite a few
people who are by now happily into their iPod – no doubt listening to Lady Gaga
or One Direction I suspect, with an occasional parent reminiscing over the new romantic era of Duran Duran and Spandau Ballet. What did people do on coach trips in a pre-iPod world? I seem
to remember that to keep your kids quiet back and achieve parent karma back in the halcyon days of seaside
coach trips, whether Sunday School or the Working Men’s Club, was the obligatory pop and crisps. This was generally
followed by little Johnny being sick, lots of moans and groans and shouts of “disgusting”
and a pervading stench of TCP for the remainder of the journey.

I think I prefer the world
created by Apple! At least as far as coach trips go!

Looking around I see
people at different phases of life. Young children, teenagers, and some in
their twenties, then there are the thirty, forty and fifty-somethings. All have
a story. All with this trip because of someone in their life with Down’s
syndrome. Some are struggling with school issues, some have family problems. Some
are parents who have had a child die. All have a story. All in need of support.
And all happy to support one another. Community.

It’s a privilege to be on
this coach as it struggles up the hills of the leaden skied Peak District. I
wouldn’t want to belong to a world where we didn’t recognise one another’s
hurts, where we couldn’t see the fragility of life. I love having that tug
inside that implores me to do what I can to respond to the need of my fellow
man, to make a difference in a world where so many are indifferent.

The excited chatter
increases as we pass more and more brown signs pointing us in the direction of
thrills and screams. And I wonder that is actually life all over for parents of
someone with a disability. There are thrills and screams often as the tide of
life ebbs and flows. So much to celebrate, yet so many challenges. It’s the
silent scream that’s loudest. At least as far as today is concerned I’m certain
Emily will be thrilled and I’ll be doing the screaming!

It’s 9.59am according to
the red digital clock as the driver pulls into the car park. In a few minutes
time my eyes will be bulging as my body is thrown across the Staffordshire
countryside at speeds and angles it was never built for! Time to wake up I
think!